Mom recently diagnosed, Dad in hospice, preparing for dad's passing

sve

Hello, I just joined this forum, and am looking for suggestions. My elderly parents (93 and 91) are having difficulties. I am their primary caregiver. Dad will pass soon (home hospice), my folks are living in Senior Independent Living apartment together. We have not communicated the DEMENTIA diagnosis to my mother yet, and when Dad passes will likely need to move Mom to Memory Care (facility requires move to another apartment for MC or other level of coverage/support). I would like to gently communicate the diagnosis with my Mom soon to avoid her potential feelings of hurt and betrayal. Trying to get meeting set up with Mom's primary physician, but not available until a month from now… may be too late. Any ideas to address this situation constructively and promptly? Thank you very much

harshedbuzz

@sve Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I would encourage you to read Understanding the Dementia Experience. It's a quick exploration of how a PWD typically parsing the changes in their memory, cognition and abilities.

A couple of thoughts—

When a PWD with dementia loses their spouse, you can expect an exacerbation of dementia symptoms as if they are progressing into a later stage of the disease. Even a very sick spouse or one with similar dementia provides a surprising amount of scaffolding which can mask how impaired the PWD actually is. This happened with my aunt and uncle and it was startling.

Many, if not most, PWD also have a condition called anosognosia which prevents them from being able to appreciate their deficits. Your mom may feel as though she is as capable as she ever was and will feel gaslit if you try to convince her otherwise. This will cause her to become suspicious of you at a time when she really needs to be comfortable with you helping her.

I'm not sure what you expect of her PCP appointment. IME, many don't choose to share the diagnosis with patients in order to preserve the relationship. A few will go out on a limb and insist a patient not live alone or not drive, but I've never personally known of one who orders a patient to go into MC or explains why it's needed. A PCP may cloud the situation with suggestions you've already ruled out like moving mom in with one of you; dad's doc did something similar when we brought him in for a pre-placement physical.

Most people who are moving a parent against their wishes, which is typically how parents are moved, create a therapeutic lie (aka fiblet) to explain the change as both temporary and based on something that is unrelated to her or her cognitive issues. Since she's already in a CCRC, you could tell her the apartment is being painted or updated or treated for mold and she'll have to stay elsewhere while it's done. Rinse and repeat.

Good luck.

HB

H1235

I think the thing to do is what brings her the least amount of stress and upset. You know your mom best, but here are some things I would consider. If she is told will she remember? Reminding a person they have dementia serves no purpose. If she won’t remember anyway is there a point? I can imagine keeping something this big from her would weigh on you. Would you be telling her to ease you conscience? You might say she has a right to know, but is knowing going to be in her best interest. How important is that right to know, if it causes her to become more depressed, or causes her to be angry. Will she believe you if she is told (anosognosia)? If you’re thinking about moving her to mc then I assume she is well past the point of managing finances, making her own medical decisions, and has a fair amount of confusion. In my opinion it’s probably not worth the upset it would cause to tell someone moving to mc they have dementia. My mom was told by her neurologist. She was in stage 4 and was able to kind of handle it at the time. Now she remembers the diagnosis, but tells me the doctor didn’t know what she was doing and is angry. Its been 2 years. I would not want to tell her today. My brother insists mom be told absolutely everything. I have seen the unnecessary stress, anger and upset this causes and it breaks my heart. It’s hard!

ARIL

You know your mom best, but I would consider talking about a move to a “new apartment” without the drama of a discussion of the diagnosis. Or you can be more vague: “Your doctor recommends that you live in an apartment where you can get the best kind of care for you.” Can you talk about good features of the new room, even the arrangement, furniture, or decorations? I agree with what others have said here about the PCP, and I’d consider what approach will help to reduce your mom’s level of stress overall—especially since she (and you) will be mourning. It’s so hard. I feel for you.

otfgirl750

So sorry for your reason to be here but hoping the forum helps.

We went through something similar last year. Dad at 90 fell and had to go to hospital then rehab. Mom at 88 had signs of dementia but Dad covered it for years. When he fell we had to get her to assisted living since we all lived out of town. We told her it was temporary so she could be near Dad (it was attached to rehab) but we knew it was permanent. It was very hard for her and made things worse. After 2 months Dad moved into her AL apartment with hospice and we thought it would get better for her. At this point she wanted to see a DR because she said something was wrong with her brain so she recognized some of it. I took her to PCP where he did tell her very kindly her diagnosis but she didn’t fully understand and later did not remember it. The PCP seemed to want to dismiss her as a patient and I don’t think it helped her. We are now with a neurologist.

She doesn’t accept the diagnosis or remember it so I have to agree that the drama of diagnosis may not be helpful but you will know best for your LO.

tboard

https://alzconnected.org/discussion/72548/mom-recently-diagnosed-dad-in-hospice-preparing-for-dads-passing

Your mom probably won't believe her diagnosis. After your dad passes it should be easy to make an excuse to move her. Even if she did understand and believe the diagnosis she won't benefit from knowing it.

lisn2cats

So, this hits a raw nerve. My dad, who had been battling multiple types of cancer, fell on Feb 1, broke his hip (surgery went well despite his near depletion of bone), got pneumonia, was moved to a long-term rehab center and by the end of February, we knew he was not doing well and he passed on March 1. In the meantime, my mom, who has been dealing with an ongoing decline in memory loss, got significantly worse as my father's health declined. At 90, she is physically pretty fit but her mind….

One of the things she insists (and I believe) is my father said he wanted her to age in place (in their home) but with home care services. She conveniently forgets that last part. I'm an only child and, before finding this forum, was trying to do everything in my typical manner. I am learning.

I am learning that arguing or begging her to remember simple things (like what day it is), is pointless. She won't remember. On her good days, she admits she is struggling and has fears and her first go-to is to be critical and negative. Those days are rare. Lately, because she has an aide she doesn't want or thinks she needs, she has become verbally abusive to me and treats the aide like a maid. I am learning to ignore the nasty texts that come in a steady stream, mostly at night and early morning. I am learning that she is very confused and scared - and her coping mechanism is to deny she's forgotten things, that she asked for and needs an aide, criticize anyone who doesn't cater to her need for constant attention.

I also learned that her grief is so profound. While I lost my dad, she lost her soulmate of 62 years. And she's in a state of perpetual confusion. She is in her angry stage. Not at my dad but the universe for taking him, at me for taking over the paperwork and finances and playdates, at her friends for not visiting her every day and entertaining her, and I think she is angry that she is going through all of this.

My personal opinion is to wait and take things slowly. So much change is happening naturally. I know with my mom, she needs time to adjust to her new normal, which (honestly) sucks.

I'm new to this site and situation, too, and feel your pain. It does feel good to share and I've already received some wonderful advice.

Keeping you in my thoughts!

Quilting brings calm

@lisn2cats What you dad wanted for your mom, or what she wants…. Might not be the right choice for her without him. The choice that makes her safe. In addition, she might be less anxious in a facility with the appropriate amount of care for her. A place that has daily activities, meals, and people to socialize with. Finally, we can’t make people with dementia happy. We can only do our best to keep them safe. No one should promise to keep someone at home- they should only promise to make sure they are cared for.

harshedbuzz

@lisn2cats

When parents state a desire to remain cared for in their own home without making that happen— they've made a wish and not a plan.

HB

lisn2cats

hmm. now I feel scolded by strangers. Great.

Quilting brings calm

https://alzconnected.org/discussion/comment/238879#Comment_238879

We don’t mean to scold you. We’ve just ‘been there done that’ for years, and we try to give new people the benefit of our miserable experience. It’s very hard to admit that someone you love is no longer able to live without 24/7 supervision. So we are here to point that out - you will find that we all are very supportive here but also very honest and sometimes blunt.

ARIL

There are common experiences to be sure, and at the same time every situation is unique. As I reflect on the past several years, I see a long period in which I tried and tried to help but had to come to terms with my limited ability actually to effect the changes I knew were needed. (A literal kidnapping was not an option.) When the day came that I could effect major change, I did it. Before then, I took the incremental steps that I could. What’s important now? was a key question. Prioritizing kept me more or less sane.

What I have learned through the twists and turns of this journey is that it is critical to stay present (even if you are long distance), that it is essential to be patient (with others, with yourself), and that if you do what you can, as you can and when you can, you are doing good work. This is a hard road at its best.

kh945312

https://alzconnected.org/discussion/72548/mom-recently-diagnosed-dad-in-hospice-preparing-for-dads-passing

hi…I agree with another post about not telling your mother about the dementia. I told my mom 5 years ago, and have really regretted it. She then began accusing us of thinking she’s crazy, thinking I’m just trying to steal money etc. It’s been terrible. Constant battle of anger, suspicions etc. Sending you good thoughts. This has been really rough for years.